Ros Reines: 'I lost my baby at 18 weeks'

By the time I was nearly 18 weeks pregnant, I’d decided on a name for my son and had gleefully slipped into my pregnancy wardrobe. Then my world caved in.

I was given the devastating news that Rafael wasn’t going to make it and I would have to give birth to him in the next few days in hospital.

In a matter of moments, I had transformed from being a happy, expectant mother to someone carrying a child who’d been given a death sentence. I started to blame myself. Clearly there was something very wrong with me if my so called fertile womb was little more than a prison.

Rafael’s heart was still beating but he had no amniotic fluid around him, which had resulted in a host of physical problems.

The complete diagnosis was 'Potter’s Syndrome Type 2A' and the odds of this happening — I was told — were around one in 2000. There was no cure.

That day I learned 'Potter’s' is a rare genetic disorder that effects only boys and is not compatible with life. Unfortunately it hadn’t been picked up in the earlier tests — although this was 26 years ago when prenatal testing was much less sophisticated than it is today.

My baby’s critical condition was diagnosed at an 18 week ultrasound and the first I knew about it was when the chatty sonographer had suddenly gone quiet.

Staring at the screen in disbelief, she’d brushed off my questions and hurriedly left the room to find a doctor. It seemed as though she was gone forever as I lay there in the semi-darkness, trying to deny the overwhelming feeling of dread that had taken hold of me.

Some time later, I found myself in a tiny room with a box of tissues, waiting for my obstetrician to confirm what I’d already sensed in the ultrasound room. There was something very wrong with Rafael.

I’d arrived alone for the ultrasound as I’d argued with my partner the night before, the pregnancy hormones raging through my system had made me even more emotional and sensitive than usual. Now I had to phone him to give him the news and tell him to come and collect me. I was so shaken that I couldn’t even explain where the ultrasound rooms were located.

The few days between the diagnosis and being admitted to hospital to deliver Rafael, passed in a blur. There was not nearly enough time to process what was happening and to change my mindset from pregnancy to stillbirth.

All too soon, I was standing in a private hospital room in the old Royal Women’s in Sydney's Paddington, contemplating the pristine bed before me when I didn’t feel ill just overwhelmingly sad.

It would take a total of three days before Rafael’s birth was induced. I was alone in the en-suite bathroom when it happened and I didn’t look at him because I didn’t want that image to be engraved in my memory forever.

Later a kind nurse arranged Rafael in a little bed with flowers around him and took a photo for me. I needed to give her a keepsake of my son in return and chose a fine pearl bracelet. I also donated trees in his name to a memorial forest in Israel.

Unfortunately the story didn’t end there because some of the placenta had not been expelled. Days later I started bleeding badly and had to return to that same hospital ward for a curette.

It took me a year to feel like myself again after losing Rafael and for my body to recover from the trauma. The grief would come at me at odd moments when I would suddenly find myself tearing up again.

I suffered a total of five miscarriages and became used to the process of being shown into the room with the tissues before my obstetrician arrived to tell me that once again my pregnancy wasn’t viable.

However just two years after losing Rafael, I gave birth to my healthy son, Joel and I suddenly remembered what happiness felt like again. He’s now 24 years old and has always been a joy to me.

Rafael’s memory remains at the edge of my consciousness. When the Royal Women’s hospital was moving to Randwick, all those who had lost babies there were invited to a special ceremony in the grounds.

We were given a small tree to plant and the opportunity of recording the names in a book.

There was a sea of tears that day among the gathering of women who had shared such tragic experiences. Some were quite old but the pain was etched in their faces as though it had just recently happened.

It made me understand, the importance of acknowledging the loss of a pregnancy, which happens all too infrequently in our society. As modern women we’re taught to brush it off, pick ourselves up and pretend that it never happened. Perhaps we need to establish new rituals to deal with this kind of pain?

After all every pregnancy potentially brings with it a sense of wonder at ushering a new life into the world. What is needed now is a way of learning to cope when that life ends.